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of the India Journal of Best Supportive Care are solely
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Oncologists regularly devastate
their patients by launching a triple assault of
diagnosis, prognosis and protocol. Young doctors
interpret the results of tests and simply convey
the diagnosis as "stage IV lung cancer with
poor prognosis." Many oncologists even give
chemotherapy protocols to the patients and hand
over leaflets of product information. That is
great reading to be handed over to a patient when
he has just been told that he has cancer! The
patient tries reading a chemotherapy protocol
which talks of the product pharmacology, how it
is administered and its side effects. There is
not a single word in it suggesting that it will
help-it gives only destructive information. No
wonder the patient might feel he would rather
die a quick death than submit to the tortures
described in these documents. However, there are
brave souls who submit themselves to suffer from
virtually every one of the possible side effects.

Unfortunately, when doctors
look at their patients, some see only the disease
in them. Many of them need to be reminded that
there is a human being in the room. The patient
is not just a disease like non-Hodgkin lymphoma
(NHL) or sarcoma or squamous cell carcinoma of
the lung, but a person. A medical college teaches
everything we need to know about writing prescriptions
but nothing about understanding people.

Doctors note down the facts
of a patient's medical history without paying
much attention to the patient, but we must never
forget the look on the his face, the tremble in
his hand, the falter in his speech, the dropping
eyelids and the hidden signs of what troubles
him. Much of the communication between doctor
and patient is non verbal. Many times when we
see patients from other states or countries, and
there is a language barrier, we show our concern
through non verbal forms of communication.

It is well accepted that
the practice of medicine has changed drastically
by advances in the doctor's ability to both diagnose
and treat disease. Unquestionably the curative
powers of the physician are vastly greater than
ever before. But our power to heal people and
their lives seems to have diminished. The patient
is repaired but not healed and he is not a better
person than he was before.

Every doctor thinks of cure
as healing power. Every patient they lose represents
a profound failure and curing becomes an addiction.
Since all doctors are bound to lose some of their
patients, they develop a sense of failure as the
tally of losses rises. Is medicine not a failure
oriented profession where we measure our success
not only via cure rates,
but also via morbidity and mortality? It is because
we emphasize the disease rather than people.

Let us cure the disease
and care for the person. Let us understand the
human angle of the disease. Disease is more than
just a clinical entity. It is an experience and
a metaphor with a message that should be listened
to. We should be willing to treat more than a
disease by supporting our patients emotionally
and loving them in addition to caring for their
physical ailment. We may be able to redirect their
lives, not just treat their illness.

A few years back I
received a letter of thanks from a patient's child,
"I am indebted to you for providing my Mataji
with the most effective medicine-sincere care,
positive attitude and concern. God bless you and
thank you for your kindness, concern and above
all for being my mother's friend."

Cancer survival is known
to vary according to the socio-economic circumstances
of the patient. With cancer patients in India,
one sees this in reality every day. Cancer, for
patients in India who are poor, have no health
insurance, or have small-time jobs and support
large families, means a death knell. Even if patients'
cancer is diagnosed in the curative stages, the
cost of treatment, surgery and follow-up regimen
makes it impossible for poor patients to pursue
any meaningful treatment. Surgeons and doctors
who deal with cancer patients in government-run
hospitals in India see this much too often during
their work.

As a surgeon, I have been dealing with cancer
patients for the past six and a half years. Especially
during my stint with the PGI Hospital in Chandigarh,
we dealt predominantly with abdominal malignancy
patients. Many patients there used to be in end
stage disease and because of the heavy patient
load, we could not offer to give our patients
supportive care. I remember distinctly a patient
who had carcinoma of the oesophagus and who we
had operated upon in advanced disease after giving
him chemotherapy. The patient went home and came
to us nine months later with a bleeding tracheo-oesophageal
fistula. We could do nothing for the patient.
With all our intensive care and general beds full,
and with more patients waiting for admission,
the patient died on a trolley in our emergency
OPD as we looked for ways to accommodate him.
That was the day I resolved that I should devote
some of my time to support terminally ill cancer
patients. There are times when as a doctor, I
feel as helpless as the patients and their families.
We don't know whether it is the monetary constraints,
social structure, lack of adequate medical facilities
or our style of work that contributes to such
a situation. However, I feel that if each doctor
goes out of his way a bit, cancer patients will
get better attention. The worst plight for any
surgeon is not being able to attend to the patients
who they have themselves operated upon. This is
where it becomes difficult to make a decision.
On the one hand, a surgeon has a terminally ill
patient for whom nothing much can be done insofar
as a cure is concerned, and on the other hand
one feels drawn to the patient as one has been
treating him for so long and one gets attached
to him emotionally.

We see cancer patients largely
in the late stages of the disease, when at least
half of them are beyond the stage of cure. Although
today there are claims that with effective chemotherapy
and advances in surgical expertise, cancer is
now a chronic disease, more like diabetes or hypertension,
but this is far from being true for Indian cancer
patients, especially those who are economically
disadvantaged. We not only get more patients in
more advanced stages of disease but many of them
can't afford the cost of therapy either.

One of our patients had a
tumour in his leg. He was in stage three of the
disease when he first came to us. The patient
was the sole earning member of the family. His
wife was unlettered. They had three children aged
two, five, and eleven. His parents were also dependant
on him. He had a dwelling in Gurgaon near Delhi
and no other assets. We wondered what it was that
we could do for him, given his socio-economic
situation. Chemotherapy he couldn't afford and
if we were to cut off his limb which had the tumour,
he would have been crippled and would have lost
his job. The patient opted for no therapy. His
mother cried on my shoulder and told me that he
has decided to earn money for his family for as
long as he may live with the disease. Six months
later, I was operating in the emergency when he
took his last breath due to diffuse lung involvement.
If we do a careful analysis of our patients, half
of our advanced malignancy patients would be those
who electively chose no treatment due to financial
constraints.

Cancer in India is more of
a social problem than a medical one, and these
problems are not confined to those who cannot
afford treatment. Some patients spend a fortune
on treatment at the best of cancer hospitals and
still face a multitude of problems. One of our
patients had breast cancer and had come to us
in the early stage of the disease. She was a lawyer
who had taken multiple opinions both in India
as well as in the US before coming for surgery.
She insisted on breast conserving surgery despite
having poor volume of breast tissue and then had
to undergo surgery thrice in an effort to get
negative margins. She ultimately had to undergo
a mastectomy. She later on did not respond to
first line chemotherapy and was hormone receptor
negative. She developed brain metastasis during
chemotherapy. She was started on Herceptin on
a weekly basis which is a very expensive treatment,
and later underwent metastasectomy of the brain
metastasis. The patient expired before completion
of the therapy. The attendants later believed
that the patient's life span during her treatment
was probably the worst phase of her life and that
she could have died peacefully off treatment!
We will never be able to tell what would have
been better for the patient.

Just as there is sad news,
we also have patients who respond well to treatment.
Surgeons and doctors are not all-knowing. Nobody
can predict the outcome of therapy for any individual.
But this is what the patients expect us to know.
We can talk of possibilities on the basis of response
in other patients and trends across the globe,
but for a parent or a spouse or a son or a daughter,
their loved one is the most precious life in the
world and they don't care about statistics.

Another problem in
management of cancer patients are the side effects
of therapy which probably drive patients towards
abandoning therapy midway. Cachexia, nausea, vomiting,
hair loss, disfigurement due to surgery: any or
all of these play a role in deciding whether the
patient will continue with the treatment or not.

Dr Pallavi is MS, and DNB,
General Surgery. She wish to become a social surgeon
who is available to patients who don't have access
to healthcare.

Cervix
cancer patients are generally a disadvantaged
group in India: economically they are poor, while
being women and mostly elderly makes their position
even more precarious. Giving the patient relief
from pain, maintaining good nutrition, and keeping
the patient clean and dry are important factors
in palliative care for cervical cancer patients.

Forty-five-year old Bimla
Devi lived in Rishikesh and suffered from cervical
cancer. Her final months were most painful and
distressing for her. Foul-smelling discharge,
diarrhoea, incontinence, unbearable pain-her life
and death were as difficult as they could get
for a female cancer patient. Her estranged family
put her in a corner of her house, wishing they
could get rid of her. Bimla Devi was just one
of the estimated seventy thousand women who die
of cervical cancer in India every year, the commonest
cancer killer among Indian women.

As a gynaecologist working
in a premiere state-run hospital in Delhi, I see
hundreds of cervical cancer patients every month.
Women around or over the age of the fifty are
the ones most affected by this female reproductive
organ cancer, which is incidentally simple to
detect through an inexpensive pap smear test.
Yet, many patients arrive at a hospital or go
to a doctor only when the disease has already
reached a non-curable stage. Patients, especially
those who are economically disadvantaged, have
to continue to go to hospitals for relief. In
hospitals which are already under stress due to
a high patient load, gynaecologists or oncologists
generally refer patients for palliative radiotherapy
to give symptomatic relief from pain or other
irritating symptoms like dribbling of urine, whereas
the patient actually needs extensive gynaecological
care at home and in the hospital in order to live
with minimum discomfort as the cancer progresses.

In India, to be a woman belonging
to the poor strata of society and to be suffering
from cervix cancer is one of the hardest things
to endure. The living spaces are small, there
is no palliative medical care at hand, and the
families are ill-equipped to understand cervical
cancer and ways of dealing with it in the advanced
stages. The commonest complaint a cervix cancer
patient has is foul-smelling vaginal discharge,
which can be for instance, a combination of blood,
pus, stool, urine and tissues. Keeping the patient
clean, dry and odour-free becomes a challenge.
In poor households where space is cramped, the
shared room or toilets start to smell fetid and
it becomes impossible for the family to stay near
the patient. The mental and emotional stress that
the patient suffers is unimaginable. If a fistula
develops in the vaginal region or around it, then
the urine and stool elimination passages sometimes
connect and the urine and stool are excreted,
mixed with each other, or the urine dribbles continually.
Availability of dry clothes and adult diapers
is very important in such a situation.

Not only does the patient
need to be kept clean, she also needs to be moved
gently in the bed so that bed sores don't develop.
Weak, under-weight, emaciated patients have to
often lie in their own discharge, unturned on
the bed, compounding their physical pain. Pain
in the lower abdomen, the limbs and burning sensations
during urination are also very common complaints.
Even though pain relief is paramount in palliative
care, pain relief medicines, especially opioids,
are not so easy to come by in India.

More often than not, death
in cervical cancer patients is known to be caused
by renal failure. When the tumour inside increases
in size, the tubes from the kidneys that bring
urine to the bladder are pressed, thereby blocking
the outflow of the urine. The kidney function
becomes impaired as a result, with the feet swelling
up, blood in the urine and other symptoms. Renal
failure can cause death if the condition is left
untreated.

Not only does the patient
have to suffer great misery physically, but the
family, especially the husband, if not supportive,
can make life harrowing for the woman. I have
seen husbands abandoning their wives or leaving
them unattended with the messy and painful advanced
cervical cancer. When a female cancer patient
needs her family's care the most, she is usually
least cared for, at least in poorer families.

The author is a senior gynaecologist
at the Safdarjung Hospital, Delhi, and has a special
interest in palliative care.

When cancer recurs, patients
and their relations do medical shopping from doctor
to doctor in the vain hope of hearing that this
was a wrong diagnosis. They may seek help and
reassurance from fortune-tellers and faith healers.
They may arrange for expensive trips to famous
clinics and physicians and only gradually face
up to the reality which may change their lives.

Relations play a significant
role during the time of illness and their reactions
contribute a lot to the patient's response to
his/her illness. Recurrent illness may bring about
significant changes in a household which the wife
has to get used to. She may feel threatened by
insecurity and loss of dependence on her husband.
She may have to do many things which her husband
used to do, e.g., manage business and financial
matters, etc. There may be a total reversal of
roles and even children may add more responsibility
on the mother -she may feel that she is a lone
parent.

Family needs keep changing
from the onset of the illness and continue to
take many different forms until after the death
of the patient. Family members should use their
energy economically and not exert themselves to
a point that they collapse when they are most
needed. An understanding helper or relation or
even a cancer care volunteer can contribute a
lot in helping the family to maintain a sound
balance between serving the patient and respecting
his/her own needs.

It is very common to see
relations who don't want to communicate the seriousness
of the disease to the patient. When the dying
patient's problems eventually come to an end,
the family's problems often go on. Many of these
problems could have been decreased by discussing
them before the death of the patient. Unfortunately
relations tend to hide the facts as well as their
feelings. They try to keep smiling faces as if
things will be ok soon. The majority of terminally
ill cancer patients know that they have a short
time to live but loved ones often say, "Don't
tell my spouse, he/she will not be able to take
it." The patient will respond in the same
way. Both of them know the facts but neither have
the courage to share it with the other and this
sometimes after even forty years of marriage.
Emotional support groups and palliative care workers
can encourage the families to share their feelings.
Both can be relieved without playing deceitful
games. I think the dying can really help their
relations if they communicate freely in terminal
phase. Relations will then remember their love
one's strength and bear their own sorrow with
more dignity.

People are reluctant to talk
freely about death or dying. Communication may
be difficult the first time but becomes simpler
with gained experience in meaningful communication.
This can bring a closeness and understanding between
family members.

We have seen many old men
and women, however, who have become disabled physically
and emotionally, and who required a tremendous
sum of money for a dignified maintenance of a
level their family desires for them. The family
is then often confronted with a difficult decision,
namely, to mobilize all available money including
loans and savings for their own retirement, in
order to afford such final care. The tragedy of
these old people is perhaps that the amount of
money and often financial sacrifice does not involve
any improvement of the condition but is a mere
maintenance at a minimal level of existence. If
medical complications occur, the expenses are
manifold and the family often wishes for a quick
and painless death, but rarely expresses that
wish openly. That such wishes bring about feelings
of guilt is obvious.
Patients in their terminal days may become non-communicative
(due to neurological deficit). As doctors and
care givers, we should never classify anybody
as vegetative just because he cannot react to
external stimuli. We should continue to give respect
to the patient in all forms of communication.

Many relations insist on
hospital admission and care in a high dependency
area of the hospital where they are not allowed
to go except for two visits a day lasting half
an hour or so. They keep grumbling and being angry
at the nurses for being so cruel so as to allow
them only a few minutes with a patient who has
little time to live. I might well ask the relations/spouse
of the patient, "Was that the way to say
goodbye to your relation with whom you have spent
forty years?" Is it not wiser to care for
such patients at home or in a hospice where spouses/relatives
can spend the maximum amount of time with their
loved one? Home care teams can guide relations
and give emotional support to patients. In hospice,
arrangements can be made for relatives to stay
with the patient. Relations can sit, rest and
eat together, when they can share their loneliness
and perhaps console each other during the endless
period of waiting.

Social workers and spiritual
advisors can be available to patients and relations
to address social and spiritual issues in terminal
phases. Once the relations are made aware of the
problem, prognosis and outcome, they can give
emotional support to the patient and generally
don't attempt to disturb the doctors and nurses
in their work. Spiritual advisors and counsellors
can help them find understanding of their own
agony and also solace.